Reader Story: Catheter Self-Management

Supporting Others

Mind your pees and queues!

New Plymouth reader Frank Gaze has learned how to self-manage his catheter needs, but wants to connect with other readers so they can share information and support each other.

"Your bladder is stuffed," said the urologist. "Or, to put it more politely, your bladder has lost its elasticity and the muscle doesn’t work to evacuate all the urine.” I imagined a flabby toy balloon that had become weak through being blown up too often.“That is why you have this retention problem.”

The ultrasound had shown almost a litre of fluid left in the bladder after a visit to the toilet. He said there was a relatively simple solution.

"We will get the District Nurses to teach you how to self-catheterise. This is less likely to cause infections than an indwelling catheter with a bag."

"I suggest that we need a regime that you are likely to continue, so twice a day would be a good idea, although three times would be even better. It needs to be a process you will cope with.”

I made a mental note that three times a day would work best.

“What do you think?” he asked, as if I had a choice. I had used an indwelling catheter with a bag strapped to my leg for six months. In this situation you empty the bag whenever you are near a toilet, a routine that works fine. You don’t have to get up in the night (hurray!) and, compared with other ways of dealing with the bodily problems of old age, it was dead easy to manage. Its only drawback was infections every few weeks, and if self-catheterisation would reduce this problem, I was all for it.

The object is to protect the kidneys, he said. "We don’t want the retained urine to back up to the kidneys, because that can cause damage and eventually puts strain on the heart.”

I got the message: do it or else. So I agreed, thanked the urologist for his advice, and resolved to welcome the nurse when she arrived.

I knew from the experience of having the indwelling catheter installed, or changed, or removed, that you are so involved with managing the process that you have little time to think about being embarrassed at having a strange lady fiddling with your privates.

The District Nurse arrived the next morning. She was one of the old school (no nonsense, hearty, determinedly positive) and wasted no time, producing a 40 centimetre catheter and a tube of gel. She showed me how to smear the catheter with gel, and the tip of the penis, too, after wiping it with a baby wipe. She then gave me a running commentary as I slowly, with 'firm steady pressure', put the catheter into my urethra until urine started to flow into a container she had fortunately produced at the right moment.

I did feel a little resistance as the tip of the catheter pushed past the sphincter at the prostate gland. Otherwise, a piece of cake!

Over the weeks and months since then I have gradually become more skilled at the process. I now hardly notice the hiccup at the sphincter and am sure my membranes have become toughened.

In fact, most of the time taken each day is concerned with efforts to maintain and improve my cleanliness. The procedure is called 'clean self-catheterisation'. It is not expected to be sterile, or antiseptic, which takes a great weight off one’s mind.

Researchers tell us that 20 seconds in running water, hot or cold, with or without soap, is enough to flush away 99% of ordinary bacteria.

I usually use a Dettol liquid to wash my hands before and after. And I wipe up the basin and surrounding vanity areas carefully every time too.

My wife found a piece of furniture like a laundry box to hold the equipment: small bucket, measuring cup, gel, catheters, wipes. The top provides the necessary level surface for preparing the catheter. And she crafted a zipped container like a plastic pencil case to contain the catheter.

Catheters and gel are supplied free by the Health Board.

I read on the internet that some people can use a catheter more than once, and have settled in to the pattern of using one a day. The problem is to find something to keep the clean catheter in until the next use, about eight hours later. No shop I tried had snaplock bags or click boxes 40cm long. One day I still hope to find my ideal container.

Meantime I use the homemade catheter case.

I searched the supermarket shelves for suitable wipes. I soon found budget baby wipes 80 to the pack for about $1.70. They are soft, well-soaked in cooling liquid, and large enough to tear into three pieces; I use one a day costing about two cents!

Urinary tract infections have occurred several times over the year since I have been maintaining my own catheter.

Each time I have gone to the walk-in clinic at our medical centre to provide a small urine sample, which they test immediately.

The doctor then prescribes an antibiotic, which usually relieves the symptoms quickly. They also send a urine sample to the lab later, to check that the antibiotic has worked.

Once I had to change medication after the lab test. But weeks go by without any infections. In my case, the tell-tale signs of an infection are an unpleasant smell in the bathroom and cloudiness in the urine. Infections seem to be getting less in number with time.

Travelling provides new problems. It is fine if one is staying in a motel or with friends or family. But on long journeys 'on the road' it can be difficult to find a suitable public toilet. Ordinary public toilets, even the most modern and clean, are just about useless because they have no level spaces big enough to hold a 40cm catheter (when travelling I use a new one every time). Also, washing facilities are never near enough to the toilet pan.

Disability toilets are not much better, with basins typically located even further from the toilet pan. Baby change rooms are usually the best option. While the change tables are not exactly level, they can be made to serve the purpose of holding the catheter level while I apply gel, while the catheter won't fall out of its packet while I complete the process. Even then it's difficult to reach the change table from the toilet; they're at opposite ends of the room!

I have several times thought a discussion or support group, perhaps by email, would help those of us in this situation to compare notes. I hope Family Care can provide a platform for those of us who self-catheterise to communicate. There are certainly enough of us (at least 3000 around New Zealand, the nurses tell me)

Contact Carers NZ if you’re interested in taking part in a support group. Phone our National Carer Resource Centre toll free on 0800 777 797, or send an email to centre@carers.net.nz

Did you know?

There is a Toilet Map you can access on the internet to show you where to find disability friendly public toilets!

Operated by the Crohn’s and Colitis Support Network, it can be found at www.toiletmap.co.nz

The Toilet Map will help you to plan loo stops while you're travelling, or out and about. The Map includes information about accessible public toilets, though Frank says the best ones are often located in shopping centres or certain retail stores, so the picture is not complete.

"I find baby change rooms are the best option for my purposes, and you can select this facility on the Toilet Map search engine. I hope that in the future the Toilet Map will include all publicly accessible toilet facilities, not just those provided by local authorities."

The Crohn's and Colitis Support Network says privately owned retail, restaurant and shopping mall toilets are added if permission is given, and the Toilet Map is as current and comprehensive as possible.